Story of my Life

My son was diagnosed at nine weeks of age with a rare blood disorder called Hemophagocytic Lymphohistiocytosis (HLH).  He underwent months of chemo before having a stem cell transplant when he was six months old.

Jeremy had CNS involvement so one of the treatments he had to have was intrathecal methotrexate.  This basically means he had to have a spinal tap once a week for five weeks to check for disease activity, then have chemo put into his spinal space to fight the disease until his spinal fluid was cleared of disease.

So that is how he spent his fourth month of life on this earth.

Anyway, this treatment is known to cause behavioral disorders, and in first grade Jem was diagnosed with ADHD-combined type.

His symptoms were well-controlled until last year when we started noticing that his anxiety had greatly increased and he started developing these strange tics.  It was like watching a meth addict so we took him off of those meds this past summer.

Jeremy also has a gastric feeding tube as a result of his illness and receives most of his nutrition through a feeding pump that runs overnight in his room while he sleeps.  Within days of stopping the meds we noticed a significant improvement in his anxiety and his oral feeding so we made the very tough decision to see how the school year went, med free, in the interest of his appetite.

Everyone up to speed?  It’s complicated, even for me.

SO.  On the second day of school I got a phone call from Jeremy’s bus driver about him misbehaving on the bus.  At the time, I supported her in whatever actions she chose to take. I even got on the bus one morning to have him apologize to the bus driver and the other students.

Now her main complaint is that he talks to himself.  In his defense she did put him in a seat by himself directly behind her so really: Who the hell else is he going to talk to?  She complained to me about it again.  I apologized, and told her about his medical diagnosis.  I told her that we were going to switch his medication and that it might take a few days to get a therapeutic dose and see positive results but asked her to please give him another chance.

She sent me the ugliest text that she would not excuse his behavior because of his ADHD and meds or not that’s not an excuse.

Excuse?  No.  REASON?  Yes.  Also, I don’t like you anymore.

That happened on Wednesday afternoon.  I decided just to let it go and bide my time.  But yesterday (Thursday) morning, Evan told me something that made me angrier than I have ever been:

“Aunt Holly.  I got on the bus yesterday before Jeremy.  Miss Tammy asked me if Jeremy was riding the bus and when I told her that he was she said, “Oh Jesus Christ.””

Correct me if I’m wrong but I’m pretty sure she wasn’t actually thanking Him.

I’m addressing it with the proper authorities, tapes are being reviewed, other transportation arrangements are being made, heads are rolling, etc..

Jeremy sees a therapist for his anxiety so I called to let her in on the whole bus ordeal and she sent this email to me:

“Hi, Holly,
I was happy to hear that you’ve worked out something with Banyan Tree around services for Evan.  I imagine that will be a big help to him, and to you.

Kristi related to me the incident with the bus driver this morning and I understand you’re meeting with some school officials about this.  Since Jeremy is a boy who STANDS UP FOR OTHERS, I’m guessing that he may have learned this from you as you are his role model and will speak up for him and for Evan.

I wonder what Jeremy would say it takes to ride on the school bus and not let Trouble keep him from enjoying his time at school with the other kids.  As he knows himself, what is it that he can call on to help him have a POSITIVE BUS RIDE EXPERIENCE?  Jeremy knows what I mean by this as we have had some conversations about the COURAGE he has that keeps on growing, helping him to have a better life.

If he can TAKE ON THE TROUBLE that shows up when he rides the bus, he will probably be having good days at school.  After all, he’s one of the SMARTEST and BRAVEST people we all know.  I wonder if he would be interested in SHOCKING THE BUS DRIVERS by not doing the things they expect him to do!  He could really SURPRISE THEM by being the most behaved student on the bus day after day.  They wouldn’t know what to make of it!!  This would also keep Trouble out of his life and let him reclaim his life for himself.

Feel free to share this with Jeremy and Evan if you think it could be helpful.  I believe that Jeremy is capable of so much, including SURPRISING EVERYONE with his ability to KEEP TROUBLE AWAY!

I’ll be thinking of all of you when I am away and smiling as I imagine how Jeremy might be doing on the bus and at school.

Take care,

And you know what?  I used that advice to keep Trouble out of our morning, because mornings suck.  I put a Beatles cd in the player.  Turned it to full blast.  Danced into their bedrooms singing Yellow Submarine.  Took a poll to get their opinions on how to avoid morning Troubles.  They were up and dressed and packed and brushed and combed in ten minutes.

Everyone was in a fabulous mood.  My plan was working beautifully which is rarely the case so there were some serious “CONGRATULATIONS, LADY!” going on in my head.

From me, to me, with love.

So I go out to the back porch to grab my flip flops and noticed that there was a tiny bit of dog shit on the bottom of one.  Normally this would send me into a tailspin, but I am taking Trouble by the horns, right?  RIGHT.

Instead of being pissed about the excrement on my shoe I carried them to the front door and told the boys to meet me in the van because I was going to have to do a little dance in the grass to scrape the poo off my shoe.  Naturally they did not want to miss my shit shoe dance so they grabbed their stuff and followed me outside.

I made a big production in the front yard in front of God and everybody.  Shuffling while singing a little ditty about shoe poo removal.  The boys were in stitches.  It was awesome.

I stopped mid-verse to make a funny gesture to check my shoe – to make them laugh – which they did – and…

Sprained the crap out of the ankle attached to the foot that was on the ground and fell like a ton of bricks flat on my back in the wet grass.

I laid there, hand over mouth, sick to my stomach, staring up at the beautiful blue sky, and thought:

You know what?  Fuck mornings.  Right in the ear.

But I’m not gonna let a softball-sized ankle get in the way of my Trouble free morning.  No way.  I hide my tears.  I get up.  I get in the van and I drive the children to school (luckily it’s my left foot so my driving is not affected).

On the way to school I actually apologized to the kids for my silly accident putting such a damper on our morning.  I also talked to Jeremy about his therapists letter, paraphrasing her words:

Jeremy, you know you can control how much Trouble that comes into your life.  You can avoid Trouble and take control of your life and not let Trouble do it at all.”

Evan thought for a second and then said, “I have no idea what you just said but it sounds really wise.”


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